Madeleine’s story

20-year-old Madeleine has Aicardi Syndrome and has been supported by Shooting Star Children’s Hospices since she was 3 years old. Living with a baby, child or young adult, like Madeleine, who have very complex life-limiting conditions can be hugely demanding and isolating both physically and emotionally, feelings which are only intensified during the current climate. Madeleine’s mum Katherine explains how Shooting Star Children’s Hospices have been able to support the family during this challenging time.

“We’re been using Shooting Star Children’s Hospices since Madeleine was 3 years old for respite care. On Thursday 9th April Madeleine became unwell at home and was breathing very fast.

“Because of the current COVID-19 pandemic, I called the Symptom Management Team at the hospice for advice. One of the care team was able to come to my house to assess Madeleine and it was decided with consultation from our GP that she did need to go to hospital. Pneumonia was quickly diagnosed, but because of the amount of people using the hospital the risk of exposure to COVID-19 was high. I also wasn’t allowed to stay in hospital with Madeleine because of the risk to me of catching the virus which was devastating, but I was supported by the Symptom Management Team and care team at the hospice over the weekend.

On Monday 13th April, Katherine was asked to go to the hospital as Madeleine had deteriorated. “She needed a chest drain to drain two litres of fluid from her left lung – once this happened she began to improve, but the pneumonia took two weeks to clear with iv antibiotics. After two weeks in Epsom Hospital and a second negative test for COVID-19 we were able to move to Shooting Star Children’s Hospices Guildford hospice, Christopher’s, to continue her recovery.

“This would not have been possible without the expertise of the care team who are available 24 hours a day and without the equipment like oxygen and suction machines. Arriving at Christopher’s was a welcome relief for Madeleine and I; friendly faces and a safe environment mixed with excellent nursing care was just what we needed. Madeleine and I will be here for a little while to manage the symptoms left over from the pneumonia.

“This is the first time we’ve ever had to come in as an emergency like this and I’m truly grateful. I do not know what we would have done had Shooting Star Children’s Hospices not been there.”

Shooting Star Children’s Hospices is facing a very real and immediate crisis due to the COVID-19 pandemic. We are a lifeline to over 700 families, just like Madeleine’s – help us be there for them now and into the future by donating to our crisis appeal here.